Treatment day plus one

The pins and needles effect seems to be becoming more manageable. However I do get it in the tips of my fingers not just with an ambient temperature cooling but also if I pick up cold objects, a bottle of milk from the fridge for example. Also when I eat I get a sharp pain at the jaw hinge on the initial bite, this goes after a couple of seconds should be a deterrent to gorging on biscuits, so not all bad.
I had a shower today the first with my PICC line, Stella clingfilmed my arm just to give a bit more protection and she has already been on line and bought a more substantial waterproof protector.

In addition to the infusion here is the list of drugs I take on a daily basis through the cycle:

• Dexamethasone (steroid) 1 three times a day for the first 3 days after infusion.
• Capecitabine (chemotherapy) 4 tablets twice a day for 14 days after infusion
• Metoclopramide (anti sickness) 2 tablets four times a day for 3 days after infusion and 1 or2 four times a day as necessary.

This cycle is repeated 8 times through 24 weeks.

During the cycle I have been advised not to drink any alcohol. So, plenty of drugs (above), as much rock and roll as I want to listen too (and play badly) and as for the sex? well we'll give that a go when my lower stomach muscles and pelvis feel up to the task!

Another piece of advice was to not to sire children while I am going through this procedure, nice to know rather than need to know I thought.

I managed to move my surgeon appointment to today (Friday) so I'll get an update on that part of the treatment as well. The down side is that I suspect I will 'probed' again, not the most pleasant way to spend a Friday afternoon.

One down seven to go

Just returned from Maidstone hospital where I received my first infusion of oxaliplatin. Before the actual drug my PICC line dressing was changed, the line was flushed, then the chemo was infused, the line flushed again and we were given the tablet regimen. This whole process took a withering five hours! Hopefully the next visits will be slightly shorter. I have already felt some of the side effects associated with this drug, extreme pins and needles in my hands and face particularly when exposed to the (relative) cold. This sounds slightly effete but it was so extreme in my fingers that I couldn't pick anything up or open a biscuit wrapper. However, as I write this the effect seems to be wearing off. If  it carries on until the next infusion I have to report as it could lead to more long term/permanent nerve damage.
I was very nervous on arrival but, as throughout my treatment, the staff exude such confidence and knowledge that I found I became much more relaxed (if such a term can be applied to chemotherapy).

Once again I have enough and varied drugs in tablet form to open a small pharmacy.

Here is a picture of me receiving my first infusion and a close up of where the PICC line goes into my left arm. I had the PICC line put in yesterday and despite my fears I must say it was a completely painless procedure.

Note to self: try not to smile in every photo, it gives a distorted impression.

The PICC line enters my inside upper left arm into a vein, up to my shoulder, parallel with my collar bone and enters a large vein in my chest. I don't notice this fixing at all, it doesn't impede movement and I can safely shower with it (although swimming isn't an option). However, for me, the biggest advantage is that I won't have to have any more needles for the duration of this phase. This is because not only can chemo be put in, blood can be taken out. No more sweaty upper lip scenario at blood test time!

Note: After I made this entry Hannah came round and I opened the door to let her in. The relatively cold blast of air caused instant pins and needles in my face, principally mouth and nose, and my hands. This was unlike anything I have experienced before and felt like shards of glass, very uncomfortable. I also had an instant hot flush and felt nauseous, I took two anti sickness tablets as a precaution but on reflection I think this was just a shock reaction.

Normality

The Day household has begun to return to normality, Stella is back at work (working 2 nights a week at a local residential school), the younger kids are back at school and Tallulah is back at Uni. I have coped with getting up early to sort out the kids on the mornings Stella is working.
I crave becoming part of this normality and desperately want to rejoin the world, I still have a few hurdles to jump but am confident that I will.

One evening last week I went for a drink with some friends from work, this was a minor milestone in so far as it is always easier to say no to these invites but the risk is becoming reclusive and brooding. I enjoyed meeting up with them, listening to their woes and stories and generally having a laugh.

Also, last week I went to one of the boy's open evening, what became clear to me was that my situation has impacted on his performance at school. With hindsight (an exact science!) this should have been obvious, ripples in the pond. He hadn't told any of his teachers about me and consequently his down turn was seen as an unrelated performance issue. I explained the situation to his study group teacher and had a long chat to him about the need to let appropriate people know what's going on. He is a clever lad and I am sure he can pull it back.

I am walking 2 or 3 times a week now. I walk the same route around Knole park so that I can gauge my level of fitness. I intend to start doing some different, more taxing routes in the near future.

This week is a heavy hospital week, Wednesday Stella and I are going to Maidstone for me to have my PICC line fitted, this will take up most of the day. Thursday is my first chemotherapy session and later in the day I have an appointment to see my surgeon at Pembury, I am going to try and rearrange this as I don't know how I will respond to the chemotherapy.

I am still nervous but quite exited to get this phase underway, sooner I start the sooner I finish.

Just the medical at work later in the month where, hopefully, I will be signed off as fit for light duties. I love it when a plan comes together!

A walk in the park

Just got back from a walk around Knole park and although I am aching, back mostly, its in a good way. I went further than our usual family route and although it was at a snail's pace I still managed to work up a slight sweat, I haven't experienced that through physical effort since before my operation. This was 'try out' to see how I coped with a distance walk (only a couple of miles), as this is the only exercise I can comfortably do at the moment I intend to get out more regularly and push the distance a bit.

I didn't  get to see my Surgeon this week, his clinic was cancelled due to an emergency operation. However, I did receive a letter from him letting me know that he has arranged for me to have a 'contrast enema' to check the site of  the operation. This journey has introduced me to a whole new field of experiences as well as vocabulary, I feel fortunate to have had this opportunity.

I have also got an appointment (4 May) to have CVAD pre assessment, essentially a survey to see where best to site a PICC (peripherally inserted central catheter) or central line for the infused chemotherapy. I am still nervous about having chemotherapy but I am resigned to it and take heart from the fact that I can at least see through it to the end of treatment. Not very brave I know. I am sure that, once underway, I will overcome my nerves. 

Not quite out of the woods

The visit to see the the Oncologist held a 'surprise' last week. I have completely underestimated the amount of chemotherapy I will have, in truth I think I wanted to believe the original estimate of two weeks of tablets this was probably never realistic. The Consultant gave us 3 options involving 8 or 12 cycles for 24 weeks:

1. Just tablets ( Capecitabine) in 8 cycles of 2 weeks with 1 week free.
2. Tablets (as above) and infusion (Oxaliplatin) every fortnight (12 sessions) with a supporting pump over a 48 hour period.
3. Tablets and infusion every 3rd week without the pump.

This rather took the wind out of our sails and, to stretch the sailing analogy further, left us in the doldrums. I couldn't make a decision on the day and wanted to discuss it further with Stella before I did. I have an overwhelming fear of needles and their entry into my vein system so options 2 and 3 petrified me into not thinking with any clarity. By the time Monday evening had come, we had discussed the options and I realised that worrying about needles is akin to not having essential root canal work done because you're scared of the sound of the drill. I contacted the Consultant's secretary first thing Tuesday morning and went for option 3 with the addition of having a 'port' put in to my upper arm. This will allow easier ingress for the infusion and obviate potential complications with finding a vein.
 It is important to stress that this is curative treatment aimed at stopping  recurrence, I didn't have to go with the infusion but, as my Consultant says, it is the 'Gold Standard'. The only unknown for me here is how I will respond to the Oxyplatin, I only had minimal side effects from Capecitabine when I took it during my last round of 'nuclear' medicine. My Consultant assures us that this represents the end of the treatment and that I will get my life back when it's finished (can't wait!).

Interesting note: Bowel cancer is bowel cancer where ever it migrates to, it doesn't become liver or lung cancer just because it appears in these organs.

I have asked for the cycle to start asap but to avoid the the first week in June as we have booked a week away in Devon then and the whole family could do with a break. Sadly, I will have to put my date with the surf board on hold for a bit longer. But, assuming the Mayans are wrong and there will be a 2013 I will have plenty of time to 're learn' lost skills. Speaking of which I am once again playing my guitar (badly).

Brief update

My grievance against half pay was upheld in my absence which means I will remain on full pay for another two months. As I intend to return to work in some capacity by the end of May I don't think this will prove to be a problem.
I have appointments for both my Oncologist and Surgeon coming up in the next two weeks (16th Oncology, 26th Surgery). I fully expect a 'mop up' two weeks of chemotherapy as this seems to be the norm in my circumstance and will find out what the long term plan will be. The surgery meeting will be to discuss the results of the surgery I have just had and the stoma reversal. On the surgery note I received a phone call from the consultant at Frimley Park and everything seems very positive.

In other news, Stella dropped me at the barbers today and after having my hair cut I walked home, a distance much greater than my abortive 'post box' walk. I felt fine and don't appear to have suffered any ill effects. Hurrah!

Bitter Sweet Affair

Well that's the last of the injections, another milestone. I'm feeling much more comfortable and am staying up for longer periods.
I had my first ride in a car since coming back from hospital on Tuesday, we went to the doctor's surgery. I felt like I had escaped from my confinement and enjoyed this (minor) trip.
I still have a urinary infection and am on my third set of antibiotics. The problem is that I can't drink enough to flush out the infection without flushing everything through my stoma and becoming dehydrated. Like most things I have to find a balance, I have to drink enough to clear the infection but maintain good hydration to this end I am drinking re hydration drinks as well as water and juice. Our GP says that clearing the infection may take some time and involve low dose antibiotics for a long period. However, the situation is definitely improving and I generally feel better.

My niece is backpacking around the Far East at the moment and was caught up in the recent tsunami scare. Despite missing the evacuation bus from their hotel (!) her and her friend are both safe. What did we do before Facebook? Wouldn't have known anything about it I suppose.

We went to Sheila's funeral yesterday as well as being a bitter sweet affair this by far my longest trip and period without a rest to date. Bitter because it is heartbreaking to see Mum, Dad, relations and friends so upset; but also sweet, a glance around the congregation showed how broad Sheila's circle was encompassing very old as well as (relatively) new friends. For me, although sad, her mass was a celebration of her life. The wake was an opportunity to catch up with Uncle Dave who flew in from Canada for the funeral, other than going completely white haired he doesn't look a day older than the last time I saw him. There were people there that knew me and my cousins when we were toddlers, more than once I heard "Is that Mary's boy Johnny?" and would become embroiled in a conversation with someone that knew me far better than I knew them. I have to say I enjoyed it.
Sheila's funeral was a landmark goal target for me, I was determined to be fit enough to go. I'm so glad we did.

I have set two more milestones, coffee up the town with Stella (a date!) and a walk around Knole park. Slowly but surely I'm coming back.