Tuesday, August 18, 2015

It's a while since I posted but a lot has happened

Monday 10th was a busy day. I had a trip to the GPs to sort out diabetes treatment and get a load of blood test samples. I also got a sick note up to and including 7th September.

I arranged an appointment with the diabetes specialist nurse for the Thursday (my birthday) and also to visit the specialist haematology nurse (Friday) and get a PET scan. They will not do the scan unless my diabetes is in control.

In the afternoon I went to the hospital to get the stitches removed. That was not straightforward as I had to wait 2hrs to get a second opinion on whether they could be removed.

Tuesday 11th - no appointments - yippee.

Wednesday 12th August - the delights of a bone marrow biopsy, one I was not looking forward to. It proved to be uncomfortable and I can still feel the effects 6 days later.

Thursday 13th I got a present of insulin to help me control diabetes. It was quite a big step to inject the first time, but it did work. I have been prescribed a basal dose of one insulin (Lantus) with a top up of Novarapid when I eat or need to bring down the level.

Friday 14th was a visit to the nurse - very nice, gave nothing away but mentioned chemotherapy.

Saturday 15th was a birthday celebration with family - I ate too much.

Sunday 16th I woke with bg levels over 20. Drastic action required involving insulin and over 15000 steps walking. It did the trick and I finished the day at 7.3.

Monday 17th was PET scan day. I was very nervous about my sugar levels. 10.7 in the morning but a lot of worry and stress about getting them to stay there. I paced about the hospital grounds for 30 mins to calm myself down. I was 10.0 and it was fine to do the test. I was injected with radioactive glucose solution then bombarded with radiation for 20 mins or so. I was glad to get it over.

Today Tuesday is a no hospital day. Tomorrow is when I get the results so I have been reading up about possible outcomes, the best being do nothing to various types of chemotherapy. Time will tell.

My wound has not healed yet ( a sign of lymphoma) and it smells a bit.

Friday, August 7, 2015

5 days on from the operation - unblocking the log jam

Things beginning to move today - including my bowels.

Monday night was not good - I coughed up a lot of phlegm and had a bad night. I did go for a walk on Tuesday but noticed the swelling on my wound got worse.

Wednesday I stayed put in the house.

Thursday saw a trip to the doctors to get some medications to help with pain relief and bowel movement. I also dropped a sick note into work.

Friday was memorable because I got my bowels to move.

Friday also saw a trip to the hospital to get stitches removed but it was too early in their opinion.

I also saw a consultant and specialist nurse.

I have a low grade non-Hodgkin's lymphoma. In more detail it is follicular and of type 3A or 3B but needs  a second opinion. I need more tests including PET scan (for which I need stabilised blood sugars) and bone marrow tests. I may or may not need chemotherapy.

The journey has begun...

Tuesday, August 4, 2015

The morning after the day before

I slept surprisingly well on the night following the operation. I still had some pain relief to keep me going. Yoghurt for breakfast and some ham for lunch.

Apart from the excitement of a lady coming to get rid of the inhabitants of a wasps' nest in our porch (after which I needed to lie down) I did try and rest.

My wife and I went for a gentle walk around 4.00pm.

No bowel movement today and pee was only a dribble if I was honest.

Operation done - what happened on Sunday

I went to the hospital for 7am and joined a queue with 4 other "electives" the term that is used when people volunteer for an operation.

I was due to be number 2 on the list (subsequently changed to first then back to 2 as I will explain later).

I was first seen by a nurse who did the usual pre operation checks (blood pressure weight etc.) but also for a blood sugar measurement as I was/am a diabetic. The reading was over 20 if it means anything to you but in any event much too high.

Next I was seen by the anaesthetist who immediately became concerned about my bloods and ordered insulin - not something I have ever taken. He also had a cold.

Finally I saw my consultant who was to perform the operation. Both he and the anaesthetist checked that I knew what was going to happen.

At about 9.00 am I got changed into a gown and was administered some insulin. After about 20 mins another blood sugar test indicated a reading of 19. I was then put to number 2.

I was walked to theatre about 10.00am and had another blood sugar test - reading this time 18. I wondered if they would operate. I was given 200mg paracetemol.

Before I knew it I had a cannula inserted and I was drifting away in three deep breaths after explaining that my daughter was a medical student at Imperial College.

Who knows what happened next except I awoke in the recovery room and was aware of my neck. I think to operation took about 20 minutes. I chatted to one of the nurses about the Queen and Balmoral. When everyone was happy I was wheeled to the ward to my own room and had monitoring stuff attached. I should add at this point that my blood pressure of 111/69 was remarkable but I was keeping calm. What was more worrying was that my blood sugars on the operating table rose to 23 - they were worried.

I got a telling off about blood sugars from the nurse on the ward but I explained I was waiting for a referral but did feel neglected.

Lunch came about 12.15 but I really struggled because of the air in my stomach and could not belch which was distressing.

My wife arrived back for visiting time at 1.00pm (she had been home for 3 hours) and the long wait began. It would take another 7 hours to get me discharged. Various people came and went including the surgeon and the anaesthetist (another telling off about sugars) but I did record an 8.1 this time. I decided to take pain relief at 5.00pm. I the ate a chilli con carne and some jelly and ice-cream with some gusto.

It seemed to take an age for discharge what with a busy Sunday and a changeover. Eventually I did (with another talking to about blood sugar levels) and came away with pain relief and a sick note.

I had to go back to the ward on Friday 7th August for stitches removal and a probable visit to the lymphoma unit where the fun will begin.

It felt good to be out of the hospital and I phoned my mother on the way back. Job done.

Saturday, August 1, 2015

It's the day before my operation

In 24 hours time I may be in theatre or recovery after having my lymph node removed. Its a fairly slow day and I am not too stressed at the moment.

I intend to spend a lot of time outdoors today while I can.

It was supposed to be the first day of our vacation today involving a trip to Scotland, something I had been looking forward to all year. I have to put up with others showing me pictures of their trips via Facebook at the moment.

My wife has got me arnica and bach flower remedies to take in the build up to recovery.

I a sure everything will be fine.


Friday, July 31, 2015

This is only the beginning

After talking with the nurse yesterday I realised this is only the beginning. I have looked up the other tests I may have to have. They range from PET, bone marrow aspiration and biopsy.

My timeline is as follows:

Sun 2nd Aug Extract lymph node - day operation
Mon 3rd - Thursday 6th Aug - rest and recuperation while biopsy is done
Fri 7th August - consultants meeting (am) and results back to me (pm)
Sat 8th August - Friday 21st August further tests and results
Mon 24th August - earliest treatment start date.
August - ??? you knows

Makes things difficult to plan at the moment as it is my annual leave.

Biggest disappointment - I thought my estranged children might make the effort to come and see me before my operation - not a chance yet.

Thursday, July 30, 2015

Today I phoned a nurse

20 days since the diagnosis. On that day I had a card from a nurse so I decided to phone him today to try and find out more.

I have an operation on 2nd August and he thinks I will have the results by the 7th August with treatment if necessary a couple of weeks later.

He said I had a slightly enlarged spleen so I need to check that out.

Overall I am good and rested and sleeping well. I am down to one beer a day so feeling not too bad.

Sunday, July 26, 2015

Life goes on

I still have a half marathon on 11th October in my sights - how realistic I don't yet know. I went for a jog/run/walk for 75 mins and saw my neighbour who had just come back from holiday. He did ask whether I had had my operation yet.

This time next week I should be back home after my operation to remove my lymph node. I wonder how I will feel.

To be honest I feel and look pretty good at the moment. My BMI is almost normal and skin is better too. Why should I ruin it by having an operation I wonder?

I di post a copy of my letter on Facebook yesterday saying I have had to cancel holidays. It seems to have stopped people posting their holiday snaps - guilt I wonder?

Its very wet here and across the whole UK it seem at the moment. So much for peak holiday times.

Just on my second beer of the evening. I am still cutting down on what I used to drink which is good.

Just wondering whether to buy a proper smartphone. My thinking is that I will be spending loads of time in hospital so will need a distraction but I have not worked out whether I will be able to use it on a ward.

Saturday, July 25, 2015

I know the date now

I had a scan of my abdomen and pelvis areas on Thursday 23rd July. A lot of waiting around and not too much action.

Yesterday 24th July I had a phone call saying I have a letter informing me of an appointment on 28th July but to ignore it. Instead the lady told me I would have a lymph node removed on Sunday 2nd August. So much for what cabinet ministers say about the NHS not working at weekends.

I expect the letter today and might publish it on Facebook. I am thinking about doing the antidote to holiday pictures by posting various shots of wards and apparatus and selfies of me in hospital beds.

So far this year I have been 11 times to hospitals. Must be a sign of getting older.

Tuesday, July 21, 2015

Still waiting for details of my operation

I am going to get a lymph node removed from my neck soon. You will see from previous posts that I have had a pre-operation check. My guess is Tuesday 28th July - my surgeon operates on Tuesdays. I have a scan booked for this Thursday to see if or how far the disease has spread.

I have worked out that at the clinic, Thursday is a telling off day (you drink too much) and Friday is the bad news day.

A few more people, including one of my students know about my situation. Everyone seems kind and supportive. My boss's boss is a bit more reticent however but I will see her tomorrow.

Its quite difficult to get motivated by work at the moment but this might be the last week for a while. I am on holiday for 4 weeks starting on Monday 27th July - not much of a holiday with operations and probable cancer treatments.

Sunday, July 19, 2015

How was your weekend?

Yesterday as a sort of defiant gesture I went into work for an open day. I told a few more people that I had cancer - mixed reactions as some knew, some didn't and some pretended they didn't know but did.

I am running at very high blood sugars at the moment and forgot to take my medication last night, but in reality the lymphoma and its treatment is most important in my mind.

I went for a cycle today - I think this will be my favoured exercise as running seems too strenuous at the moment and recovery time is long. I might even start cycling to work again.

I have been trying to relax. My wife gave me a concoction which is supposed to help during Chemotherapy and surprisingly it made me feel uplifted.

The good thing is that I have slept for 8 hours each of the last last two nights  so things are not too bad.

Friday, July 17, 2015

One week on since I was told I had cancer

If nobody had told me last Friday that I had cancer I would be none the wiser. I look fit and healthy.

I am trying to keep positive. I am in contact be email with 2 out of 3 of my estranged children. My mother (300 lies away is worried) but my wife is being as supportive as ever.

I am waiting for the operation to remove my neck lump (lymph node) and then wait for the results before starting treatment. The treatment has a high success rate but I will be out of circulation for a few months I reckon.

I have not told my students yet but don't quite know how to approach this.

As Eric Idle said - always look on the bright side of life do do do do do do do ......

Thursday, July 16, 2015

Its consistent with NHL

Pre-op today including an ECG which I have never had before.

I went to my GP today too. He said the hospital had sent a letter saying it was consistent with non-Hodgkin's Lymphoma - another piece of the jigsaw.

Even though I was on leave today I went to see my line manager. I told him that I might not be around fro a while.

One gets resigned to things unfortunately.

I got annoyed before I went to my pre-op when I was tut-tutted at by a dog walker for not keeping my hedge in check. I retorted that when you had just been diagnosed with cancer you have other priorities than hedges - I managed to stop myself swearing at her.

Wednesday, July 15, 2015

Things are moving apace

Quite a lot happened yesterday. I have a hospital appointment for 23rd July to do a CT scan with contrast. I have had one before on neck and thorax but this one also includes abdomen and pelvis as well - to check the extent I guess.

Also I had a tea time phone call inviting me to the hospital tomorrow for a pre-op. I thought it was a nuisance call as it did not have a number visible but a message was left. The surgeon usually operates on a Tuesday but also does weekends as well so things might happen sooner rather than later.

If anyone asks me how I am I say do you want the truth - usually they are shocked and say I look well.

One of my sons contacted me a couple of times yesterday in an act of unusual kindness.

Today I told some colleagues that conceivably this might be my last day for a few months. Day to day work scenarios do become less important.

I also went to see my chiropractor today and his work eased some tension across my shoulder blades.

A change of fortune for the horse racing syndicate I am a member of. One of the horses managed to win - I don't have a share in it but it was the first one this year. One I have an interest in runs next Sunday. It is too far a way to attend in person under the current circumstances.

Tuesday, July 14, 2015

Night sweats

I was awake around the 2am mark again this morning. I was aching a little today - back injury from getting out of my sports car and also sore shoulders which might be a symptom of the lymphoma.  I got up to make myself a mint tea but also had a couple of neurofens (branded ibuprofens) then started to shiver and quickly had to go to bed to warm up. I managed to get back to sleep. When I woke up in the morning it was evident that I had been sweating. My wife thinks it is symptomatic of the second stage condition but I have had sweats before. My blood glucose levels were around the 20 mark (UK units) this morning. I had read about type 2 diabetes and lymphoma links previously.

No sign of my appointment to remove my lump yet but I am anticipating this to be next week now.  I have decided to try and tidy things up today and tomorrow rather than worry about new projects.

My wife was a bit tearful last night about how awful everything was at the moment.

I am waiting to see a student who failed a drug test whilst on placement and was temporarily suspended from the institution where I work but they are letting him back. I need to read the emails to be up to speed in case he brings representation today.

Monday, July 13, 2015

I can't seem to sleep

Second night of difficulty sleeping. It's 2am and I am sitting in the living room sipping a mint tea and browsing lymphoma websites. I was told on the 10th June and its early in the morning of the 13th. I am waiting to have a node removed for a biopsy. Some have this done by local anaesthetic but I am going to opt for a general. I have no desire to see a surgeons knife.

My late father used to say people were fine until they opened them up. Last night my wife said to me I don't have to have chemo or radiotherapy if I did not want to - don't know what else is available to be honest.

Yesterday I went off my food and had low energy which is worrying. I felt very tired about 8.15pm but then had a bath before eating and watching the end of some Nordic Noir.

I feel sorry for my wife at the moment. Her father died after a long illness this year, and her male cat is having seizures, and then there is me. No respite on the holiday front which was due to start in just under 3 weeks. We cancelled on the advice of the surgeon.

Sunday, July 12, 2015

Why me?

Its the second full day after my diagnosis. I am definitely still in denial - how could it happen to me? I am only 56 and reasonably fit - I did the local 10k run in a few seconds over the hour just 3 months ago.

Everyone (well I don't know many people really) says it is important to have a positive attitude. I have got a half marathon in October in my sights but tried a training run today only to run out of energy quickly.

Its work tomorrow and many people know already - I wonder how they will react to me? I have decided to carry on normally. I have a dentists appointment tomorrow. It will be good to get this out of the way before treatment starts apparently.

I read up about chemotherapy yesterday. It looks like it might make me quite ill.

I am having contact with my estranged children. My eldest is interested from a professional view as she is at University training to be a doctor. One son says he had bought me a present - this will be the first time for 10years. The youngest son has not responded yet. It would be good to see them before I go under the knife and lose my hair but I doubt it will happen. I have not seen them since 27th June 2005 and they are less than a half hour drive away. Stranger things have happened I suppose.

Saturday, July 11, 2015

One day after My diagnosis

Yesterday I was diagnosed with lymphoma. I think I spent the day in denial. I thought today I would start writing my thoughts.

In April I noticed a lump on my neck under my chin right hand side. We are conditioned to react to lumps and went to see a GP who referred me for an ultrasound scan. The results indicated a lump. I pushed a bit more and managed to get another referral. The guys at the hospital took it more seriously. I had all the tests, ct scan, mri, guided ultrasound needle biopsy. I have two lumps now and one of them will be removed to do a thorough biopsy. This will determine the type of lymphoma and dictate the treatment.

I am going to carry on as normal. I told the people at work (to avoid any rumours) and even contacted my estranged (more than 10 years) children. My eldest who has just completed 5 years at medical school wants to know more.

I am waiting for notification of the operation to remove the lump and reading about it. My wife was up in the night reading about chemotherapy.

I am feeling positive.